Colorado Closures

 The Politics of Autism includes an extensive discussion of autism service providers.

Some are closing.

Nick Coltrain, The Denver Post:

Since 2021, at least 13 companies—operating about 35 clinics of different sizes—have closed or left the state over reimbursement rates that haven't kept up with rising costs, according to research by the Colorado Association for Behavior Analysis. Those closures have affected treatment for some 1,380 patients, and an estimated 1,000 Coloradans lost their jobs, according to the group.

"Colorado is relatively unique in the Medicaid landscape right now because of the number of programs that have closed and/or exited the state," said Mariel Cremonie-Fernandez, the vice president of government affairs for the national Council of Autism Service Providers.

..

Rebecca Urbano Powell, executive director of Seven Dimensions Behavioral Health, said she watched her waitlist balloon from two months to six months as the industry contracted in recent years. And with low reimbursement rates, she's lost entry-level staff to Starbucks and Walmart, she said, effectively cutting off entry into the behavioral health workforce before workers can get their feet under them.

"They could choose to work with kids with very severe, dangerous behaviors, or go work at Starbucks as a barista, and make the same—if not more—as a barista," said Urbano Powell, who also is board president of the Colorado Association for Behavior Analysis.

 ...

The growing role of private equity investment firms also complicates matters, HCPF warned, as firms buy up providers and close down autism services when they don't hit profit goals.

HCPF cited a national report from the Center for Economic Policy and Research that found private equity firms "move in and skim funds to pay high salaries to executives and outsized returns to private equity partners." The study did not cite any Colorado-specific impacts but noted that many of the firms it looked at operate in dozens of states.

While some budget committee members were "agnostic" to ownership structures of autism providers, as one put it, Sen. Jeff Bridges was more skeptical. While the Arapahoe County Democrat ultimately voted to increase funding, he worried it would set a precedent that investment firms could demand money to pad profits to their liking—and hold autism services hostage to do so.

"To me, it feels like a monopoly," Bridges said. "There's a real problem here if private equity is coming in here and doing what they did to other markets to autism providers. If those folks are getting in the way, then we absolutely have to take the fight to them."

Advice to Autism Parents

 In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to be advocates for themselves.

Very quickly, parents will learn that there is no one-stop shopping in the autism world.  Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape.  “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”

Paolo Zialcita at Colorado Public Radio:

As most Americans will tell you, navigating the healthcare system is hard. For parents of children with disabilities, it can be even harder. 

Jenee Allen, the mother of autistic 5-year-old Beckett, said navigating Health First Colorado, the state’s Medicaid system, is like stumbling in the dark.

“If it was more streamlined, we wouldn't spend so many hours just trying to figure this out for our kiddos,” Allen said.

Allen and other parents said there’s no clear guide to getting pediatric disability services through the state’s Medicaid program. While large, engaged parent communities exist online, Allen said, every parent seems to have a different experience.

“I feel like I understand the disability process now,” she said. “However, if you put the information out there, even on the autism groups I'm on, everyone will kind of have a different answer and so you wonder if there's multiple pathways to get there and you just found a pathway.”

Multiple parents who spoke with CPR News agreed. But they all identified a few things that all parents can do to understand the system and get their children the care they need.

Allen’s tip was simple: Be a diligent note taker.

“Keep all your records. Write down who you talk to,” she said. “If you find a phone number that you connect to, only call that number and keep records of all your emails and all your phone calls so that no one can … say something didn't happen.”

Closures in Colorado and Pennsylvania

 The Politics of Autism includes an extensive discussion of autism service providers.

Some are closing.

Jennifer Brown at The Colorado Sun:

Colorado has lost at least nine agencies that provide therapy for children with autism in the past year and a half, leaving hundreds of families without care and filling up waitlists across the state.

Therapy providers say the reimbursement rates they receive from the Colorado Medicaid program are too low to keep their doors open, especially after many state residents became eligible for the federal-state insurance program during the pandemic.

At the same time, Colorado is facing a health worker shortage and autism therapy agencies say they are struggling to pay workers enough to keep them.

Gillian McGoldrick at The Philadelphia Inquirer:

Disability providers that run day programs, in-home care teams, and residential facilities say they need more state funding to stay open, increase wages, attract more workers, and offer services to the 60,000 Pennsylvania residents who need them.

About 34% of disability service agencies have closed since 2020, largely due to a shortage of workers, according to a survey by the organizations representing providers.

More than 12,000 people are waiting to be approved for state services in Pennsylvania, and about 4,000 more are approved for services but left them due to pandemic closures and have not yet returned — mostly due to the lack of available space.

Abandonment in Colorado

In The Politics of Autism, I discuss health care issues and state social services for people with intellectual and developmental disabilities.

Sometimes, emergency rooms are a place of abandonment.

Shaun Boyd at CBS News Colorado: 

A 13-year-old boy with Autism has been forced to live at UCHealth Longs Peak Hospital in Longmont for three weeks after his dad abandoned him and human service workers told hospital employees it would take months to secure placement for the boy due to a lack of resources.

A hospital employee emailed state Rep. Judy Amabile of Boulder last week asking her to intervene.

The employee said Boulder County Human Service workers initially agreed to take custody of the boy and then refused saying he was safe in an emergency department.

"Boulder County DHS has not spent more than five minutes with this child since his arrival three weeks ago," the hospital employee wrote.

Carrying the Cross

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families, including discrimination.

Justin Reutter at The Pueblo Chieftain:

A southern Colorado man completed an arduous, nine-day journey from Aguilar to Pueblo Friday, walking along service roads on Interstate 25 with a 100-pound cross on his shoulder to bring awareness to the hardships faced by people with disabilities.

"I can't believe we made it," 73-year-old Andy Rybak said, panting to catch his breath as he set the cross down in front of the Cathedral of the Sacred Heart in downtown Pueblo, the final destination of the trip before heading home to Aguilar.

The cross, Rybak said, was a metaphor for the hardships those with developmental disabilities endure.

"The difficulties that disabled adults face are their own crosses," he said.

"This particular week is Holy Week, today is Good Friday, and Sunday is Easter... Any cross that you bear, there's a solution to it if you make the effort to find the solution."

DOJ Weighs in on Colorado Police Incident

 In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand. 

Kevin Vaughan at KUSA-TV:

The U.S. Department of Justice has weighed in on a lawsuit filed by the mother of an 11-year-old boy with autism who accused Douglas County school resource officers of “aggressively” handcuffing the child and locking him up after he poked a classmate with a pencil.

In a filing titled “Statement of Interest of the United States of America,” Justice Department attorneys argued against a motion to dismiss the lawsuit filed by the Douglas County Sheriff’s Office and the Douglas County School District.

The incident that prompted the lawsuit occurred at Sagewood Middle School in Parker.

The suit, which seeks unspecified damages, names the Douglas County School District, the Douglas County Sheriff's Office, Douglas County Sheriff Tony Spurlock, and three deputies who arrested the boy on Aug. 29, 2020. The sheriff and the deputies were sued individually.

...

ACLU of Colorado is representing Hanson in the lawsuit, which alleges violations of the student's rights under the Americans with Disabilities Act and the 4th Amendment.

In the new filing, Justice Department attorneys asked the court to consider its position – namely that the school district and sheriff’s office were required by the ADA to make “reasonable modifications” to their handling of the boy because of his autism.

QAnon, Antivaxxers, and the GOP: The Case of Colorado

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Unfortunately, Republican politicians are increasingly joining up with the anti-vaxxers.  Recent examples include a member of the House COVID subcommittee and a crackpot who is seeking the party's US Senate nomination in Ohio.

Erik Maulbetsch at The Colorado Times-Recorder:

Speaking to a crowd of anti-vaccine activists and QAnon followers at Saturday’s Worldwide Rally for Freedom, Colorado state Rep. Tonya Van Beber (R-Eaton) told the conspiracy theorists, “I’m begging you! I’m imploring you! You must continue to broadcast the facts!”

Organized by Colorado Rising Up, a state chapter of the global “Worldwide Demonstration Movement,” the event, which focused largely on anti-vaccine and anti-mask messages and attracted about 250 anti-vaccine activists, conspiracy theorists, Trump supporters, and militia members to the Colorado Capitol.

... 

 Van Beber lambasted Democrats for voting down her bill that would have banned employers- including hospitals and other health care providers- from requiring employees be vaccinated. She framed it as preventing discrimination and, quoting Orwell, predicted that its failure proves state is now on a path towards tyranny.

...

QAnon conspiracies have proved disturbingly popular among Colorado Republicans. Congresswoman Lauren Boebert is the most prominent official to have publicly promoted the group’s messages, but not the only one. Former statehouse candidate Vanessa DeMott promoted one of the most extreme conspiracies- that an online furniture company was actually selling children as sex slaves, during her campaign. DeMott lost her race bit still made it to the Capitol, where she now works as Rep. Van Beber’s legislative aide.

Yet Another Police Incident

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand. 

 Alan Gionet at KCNC-TV Denver:

The mother of a now 12-year-old boy with autism is suing the Douglas County School District, the Douglas County Sheriff’s Office and School Resource Officers involved in taking her son into custody in 2019. The lawsuit, filed with the help of the American Civil Liberties Union, claims the school district and sheriff’s office failed to adequately train and supervise SROs [school resource officers]

The lawsuit alleges the boy’s 4th Amendment right of unreasonable seizure was violated when he was handcuffed at school and placed in a sheriff’s office SUV where he remained for hours before being taken to a juvenile facility. The boy allegedly banged his head repeatedly inside the vehicle.

His mother, Michelle Hansen says she had to move the boy, named A.V. in the lawsuit, to another school.

“Very scared of police officers in uniform, when he sees one he shakes. Like trembles. It’s really heartbreaking,” she said.

Body camera video released along with the lawsuit shows part of the interaction.

“I’m shocked at how much they were touching him, his arms and grabbing him, and his neck,” says Hansen.

As a child with autism at the age of 11, A.V. was in a classroom at Sagewood Middle School when the suit claims another child wrote on him with a marker setting him off. It states he stabbed the other child with a pencil.

 

Autism, Unemployment, and COVID

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. The pandemic is a huge challenge.

Candice Williams at The Detroit News:

“In February and March, the COVID pandemic really knocked the legs from underneath us,” said Brent Mikulski, president and CEO of Dearborn Heights-based Services to Enhance Potential, a non-profit that offers training to people with developmental disabilities and connects them with internships and jobs. “We had businesses that were sincere in their interest in working to hire individuals. We were in the process of placing somebody there. They were forced to shut and lay off staff, shutter staff that used to be working. Our folks were part of that layoff.”
...
Statistically, people with developmental disabilities have had a tougher time finding employment. Prior to the pandemic in Michigan, 81% of people with intellectual and developmental disabilities were unemployed, compared to 9% of individuals without disabilities, according to statistics released by Michigan Developmental Disabilities Network in 2014.

Developmental disabilities include autism, cerebral palsy, intellectual disability and learning disorders.

Concerns about training and employment for individuals with developmental disabilities amid the pandemic exist across the country, said Donna Meltzer, CEO of nonprofit National Association of Councils on Developmental Disabilities.

One fear is that with millions of Americans out of work due to the pandemic, people with disabilities may be the last group of people to find jobs, she said.

“It may take years for our employment infrastructure to rebound,” she said. “Jobs will be scarce and many who had jobs may find that job is no longer open to them. Education that leads to work is also greatly impacted and a cohort of students who were moving forward from school to work or on to higher ed may lose those opportunities permanently. Until there is a vaccine, many will not feel safe navigating the community and choose instead to stay home – our challenge is to find ways to balance safety, health and community.”

Another report from Williams at McClatchy:

“Employment is a struggle right now, and if you have a disability, it’s even harder,” said Holly Ewing, a program manager for the Center for People with Disabilities, a nonprofit that seeks to help people of all disabilities live independently through support and services. “The more help you need, the harder it is.”

Ewing, who is based in Thornton, helps to manage the nonprofit disability service’s programs in Boulder County, as well as the programs in offices across northern Colorado.

Of the 12 people from Boulder County who are working with the Center for People with Disabilities, three lost work because of the pandemic. According to Ewing, one lost their job as a direct result of the virus, while two others initially decreased their hours, but then resigned due to health concerns. Several others have chosen to wait to search for work. In late July and early August, three of those 12 were able to start working again.

Many people with disabilities work front-line jobs in grocery stores, retail operations and at medical facilities.

“For the individuals that are working part time, they’ve really taken a hit. A lot of people have been laid off, furloughed or those positions closed,” Ewing said. “Other people with disabilities are also struggling because maybe their health issue puts them at high risk, so they need to be very careful. There are a number of people whose physicians told them, ‘You should not be going out into the community.’”

More on Antivaxxers and Shutdown Protests

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.  Trump has helped spread misinformation.

The antivaxxers are joining up with protests against the coronavirus shutdown.

For instance, antivaxxers were prominent in a Friday anti-shutdown rally in Sacramento.

Nicholas Bogel-Burroughs at NYT:

The people behind the rally are founders of a group, the Freedom Angels Foundation, which is best known in California for its opposition to state efforts to mandate vaccinations. And the protest was the latest example of the overlapping interests that have connected a range of groups — including Tea Party activists and armed militia groups — to oppose the measures that governors have taken to stop the spread of the coronavirus.

Activists known for their opposition to vaccines have also been involved in protests in New York, Colorado and Texas, where they have found a welcome audience for their arguments for personal freedom and their suspicion of government. But their growing presence at the protests worries public health experts who fear that their messaging could harm the United States’ ability to turn a corner following the pandemic if Americans do not accept a future vaccine.

...
Heidi Muñoz Gleisner, one of the three women who hosted the rally in Sacramento on Friday and were arrested by the police, said the stay-at-home orders that are now expiring in many states had mobilized people who span a variety of groups focused on individual liberty.
...
In recent years, Ms. Muñoz Gleisner and the two other founding members of the Freedom Angels, Denise Aguilar and Tara Thornton, have organized people in California and New Jersey against bills that crack down on non-medical exemptions for vaccinations and the process by which they’re granted.

Many were galvanized by a 2015 fight over a state bill introduced in response to a measles outbreak at Disneyland.
...

In New York, Rita Palma, who runs a blog and seeks to halt mandatory vaccinations, voiced support for the California protest and joined one herself in Albany, where she interviewed protesters and streamed the rally on her Facebook page. And Jonathan Lockwood, a consultant who has worked with conservatives in several states on matters including opposition to the California vaccination bill last year, founded the ReopenAmerica Project, which urges lawmakers to get the country “back up and running.”

All of this activity takes place as yet another study finds that vaccines do not cause autism. 

Another Victim of the Antivaxx Movement

In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth

Brandy Zadrozny at NBC:

Facebook groups that routinely traffic in anti-vaccination propaganda have become a resource for people seeking out a wide variety of medical information — including about the ongoing flu season.

Facebook hosts a vast network of groups that trade in false health information. On “Stop Mandatory Vaccination,” one of the largest known health misinformation groups with more than 178,000 members, people have solicited advice for how to deal with the flu. Members of the group have previously spread conspiracies that outbreaks of preventable diseases are “hoaxes” perpetrated by the government, and use the groups to mass-contact parents whose children have died and suggest without evidence that vaccines may be to blame.

One recent post came from the mother of a 4-year-old Colorado boy who died from the flu this week. In it, she consulted group members while noting that she had declined to fill a prescription written by a doctor.

The child had not been diagnosed yet, but he was running a fever and had a seizure, the mother wrote. She added that two of her four children had been diagnosed with the flu and that the doctor had prescribed the antiviral Tamiflu for everyone in the household.
“The doc prescribed tamiflu I did not pick it up,” she wrote.

Twice Exceptional

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Twice-exceptional students are both gifted and disabled.  Rachel Blustain at The Hechinger Report:

“We see kids whose challenges don’t show up on their report card, so they aren’t getting services,” said Jennifer Choi, a parent and founder of the advocacy group 2eNYC and a trustee of the nonprofit Twice Exceptional Children’s Advocacy. “And we see kids who are gifted, but they also have a disability, who lose the ability to participate in any sort of accelerated program because those programs often decline to provide special education services.”

But a handful of school systems across the country are searching for better ways to accommodate bright students with disabilities. Colorado trains teachers across the state in twice exceptionality, for example, while Montgomery County, Maryland, is perhaps the only school district to offer self-contained classes for students in elementary school who need both an accelerated curriculum and more support than they would receive in a mainstream classroom.

Now parent activists in New York City are fighting to get the country’s largest school system to be more responsive to 2e students. Last fall, after Choi’s group presented the New York City Department of Education with a survey of more than 500 parents that described the challenges facing 2e students, the agency began to offer training to staff in gifted-and-talented programs on how to work more effectively with students who have ADHD. In the last few years, three of the city’s most selective public high schools — Brooklyn Technical, Bard College and Townshend Harris — have sent teachers to learn about twice exceptionality from employees of the Quad Preparatory School, a six-year-old private school that focuses on educating these students. And in New York state, lawmakers introduced bills in 2017 that would require teacher training about twice exceptionality and programming for twice exceptional students.

...
One of the biggest barriers to educating 2e students, advocates say, is simply proving they exist. Under the federal Individuals with Disabilities Education Act, all students are entitled to the special services and accommodations necessary to enable them to learn. But to qualify for those services under the law, a student’s disability must “adversely affect educational performance.”

Marijuana Veto in Colorado

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage

These approaches sometimes include marijuana.

At High Times, Adam Drury reports on Colorado Governor John Hickenlooper (D) vetoing legislation that would have allowed the use of medical marijuana for autism.

Of the 30 states (and D.C.) that have legalized medical cannabis, only 5 consider autism spectrum disorder a qualifying condition. Colorado was poised to become the sixth. But bi-partisan support for the measure was not enough to convince Gov. Hickenlooper to sign the bill.

HB 1263 passed the Colorado Senate with a 32-3 majority. The House voted 54-7 in favor of the bill. But that, and MAMMA’s vocal presence in the capitol Tuesday didn’t sway Hickenlooper.

He says other autism advocates and support groups failed to turn out for (or against) the bill. “Their neutrality speaks volumes,” Hickenlooper said in his office.

The governor also said he hadn’t received any support for the autism measure from certified pediatricians. “I’m sure they’re out there, but I haven’t found a pediatrician yet who thinks it’s a good idea to sign this bill,” Hickenlooper said.

From Hickenlooper's office:

House Bill 18-1263
“While we are very sympathetic with families advocating medical marijuana (MMJ) as a safer and more effective treatment for their children, we cannot ignore such overwhelming concerns from the medical community,” said Governor Hickenlooper in the veto letter. He went on to say, “In vetoing this bill, we do so on sole concern that medical efficacy on MMJ to treat ASD has yet to be fully studied by medical professionals and scientific experts entrusted to this role at the Colorado Department of Public Health and Environment (CDPHE).”

Additionally, an executive order will be issued directing CDPHE, in coordination with the Board of Health, to evaluate the safety and efficacy of medical marijuana for the treatment of autism spectrum disorders in children.

View the entire executive order here.

A Friday release from Hickenlooper:

Gov. John Hickenlooper today signed a letter of support for the “Strengthening the Tenth Amendment Through Entrusting States Act” proposed by Senators Cory Gardner and Elizabeth Warren. This legislation would allow states to adequately regulate their marijuana industries without intervention from the federal government.

"The federal government needs to provide states adequate space to self govern,” said Governor John Hickenlooper. “The issue can no longer be avoided. Ultimately, collaboration with the states will prove critical as the federal government begins to engage on cannabis issues."

You can view the entire letter here.

Medical Marijuana for Autism

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage

These approaches sometimes include marijuana.

Maria Clark at The New Orleans Times-Picayune:

Louisiana residents living with autism disorder are one step closer to accessing medical marijuana as a possible treatment option.

The bill (HB 627) cleared the Louisiana House 78-21 Thursday (April 5) after several members of the cabinet questioned a new amendment proposed by Rep. Dodie Horton R- Bossier that would have made medical marijuana accessible to anyone with any medical condition. Horton added that it would be up to medical specialists to determine whether a patient could be treated with medical marijuana.

The amendment was a complete 180 for Horton who on Thursday morning voted against a similar bill (HB 579) that expands the use of medical marijuana to treat post-traumatic stress disorder, glaucoma, severe muscle spasms, and chronic pain. The bill cleared the committee with a vote of 8-4

At The Denver Post, John Ingold reports on a bill to allow medical marijuana for autism.

At the end of more than five hours of testimony and debate, lawmakers on the state House Health, Insurance and Environment Committee approved the bill by a 12-1 vote, the first of several hurdles at the Capitol that it must clear before becoming law.

The bill, House Bill 18-1263, would allow doctors to recommend marijuana as a treatment for symptoms suffered by anyone diagnosed on the autism spectrum. An initial provision in the bill that also would have qualified acute pain as a condition meriting cannabis was stripped out before the committee’s final vote.

Thursday’s hearing echoed numerous prior debates in recent years at the Capitol that pitted families with personal anecdotes of transformations brought about by cannabis against doctors worried by the lack of high-quality studies and unknown long-term effects.

Overall, more than 93,000 people in Colorado have active medical marijuana cards — 314 of those age 17 or younger, a decline from several years ago, when families with children who suffer from epilepsy poured into the state in a similar quest to help their children through marijuana.

KSWO-TV reports on a movement to allow it in Arizona:

KSWO 7News | Breaking News, Weather and Sports

Impact of Trumpcare

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities. 

At The Denver Post, my former student Alyssa Roberts writes about her disabled brother and discusses the impact of Medicaid cuts:

Overlooked in the Republican bill to repeal the Affordable Care Act (ACA) is a drastic change to traditional Medicaid funding that threatens services for more than 10 million people with disabilities. For decades, Medicaid has been their lifeline — providing everything from specialized therapies to support for daily living. Medicaid keeps people with disabilities out of institutions. It pays for caretakers so their parents can go to work. And it’s more efficient than private insurance.

Aside from phasing out coverage for 400,000 low-income Coloradans who gained health insurance through Medicaid expansion, the bill moving quickly through Congress would place a per-person cap on pre-ACA Medicaid funding for people with disabilities, children and the elderly. Since the program’s creation in 1965, states and the federal government have split the bill. Capping Uncle Sam’s share leaves two options: either shift costs to already stretched state budgets or cut services drastically.

With Colorado lawmakers locked in perpetual budget gridlock, a funding increase is unlikely. So here come the cuts. Hearing aids, at-home care, physical therapy, and some people denied coverage altogether. The American Hospital Association warns the plan could mean further pay cuts for providers who already struggle to break even. The Arc, an advocacy group for those with disabilities, says the GOP plan will leave Medicaid decimated, threatening beneficiaries’ “basic human right to a life in the community.”

Say what you will about the Affordable Care Act, but massive changes to a program that was not even part of Obamacare to begin with deserve bipartisan debate that ensures all are heard — not to be buried in a political football and rushed to a vote.

Dan Gorenstein writes at Marketplace:

The Republican plan – or the American Health Care Act – radically reconfigures Medicaid by cutting federal funding by $880 billion over 10 years, according to recently released figures from the Congressional Budget Office. That could mean a loss of services for millions of people, including one in 10 million Americans with disabilities on the program.

The proposed cuts have many disability advocates concerned. That includes Fern and Brad Pivar, whose 32-year-old son Scott has Fragile X syndrome, a genetic disorder that means he’s non-verbal, has autistic tendencies and the cognitive capacity of a kindergartner.

...
Right now, disabled Americans like Scott make up about 15 percent of Medicaid enrollment, and 42 percent of spending.

That spending is already a big target for states, which have been cutting costs by creating wait lists. More than half a million people with disabilities were waitlisted for services in 2015, according to the Kaiser Family Foundation.

Fern said she’s terrified for Scott’s future.

“I am scared as to what his life will be, that he’s going to be alone and put away somewhere and no one is going to take care of him,” she said as her voice dropped to a whisper. “You are trusting someone else to take care of the most important thing in the world. And it’s not going to be there.”

FAPE Case to the Supreme Court

In The Politics of Autism, I write about IEPs:

At these meetings, the district has several advantages, starting with Board of Education of the Hendrick Hudson Central School District v. Rowley (1982), the first IDEA case to reach the Supreme Court. Amy Rowley was a hearing-impaired girl whose parents wanted her to have a qualified sign-language interpreter in all of her academic classes. The Court said that the district was already supplying her with sufficient supports, and that the law did not require this additional step. Even though the legislation’s sponsors said that its goal was educational equality, the majority found that there was no substantive language in the statute itself regarding the level of education that children with disabilities must get:

While Congress sought to provide assistance to the States in carrying out their constitutional responsibilities to provide equal protection of the laws, it did not intend to achieve strict equality of opportunity or services for handicapped and nonhandicapped children, but rather sought primarily to identify and evaluate handicapped children, and to provide them with access to a free public education. The Act does not require a State to maximize the potential of each handicapped child commensurate with the opportunity provided nonhandicapped children.[i]

[i] Board of Education v. Rowley, 458 US 176, at 177.  Online: http://supreme.justia.com/us/458/176/case.html.

At Education Week, Mark Walsh reports that the Supreme Court has granted review in an important case about the meaning a free appropriate public education.

The case, Endrew F. v. Douglas County School District RE-1 (No. 15-827), raises an important question that has divided federal appeals courts: What level of educational benefit must a child receive under his or her individualized education program, or IEP, to satisfy the demands of the Individuals with Disabilities Education Act?

The U.S. Court of Appeals for the 10th Circuit, in Denver, ruled last year in the case of a Colorado child with autism that because the child's public school IEP had provided him with "some educational benefit," the Douglas County district had provided a "free, appropriate public education" under the IDEA.

The 10th Circuit court thus rejected a private school reimbursement for the parents of the boy identified as Endrew F. after the parents had pulled him from public school amid the dispute over his 5th grade IEP.

In an August 2015 decision, the 10th Circuit court panel acknowledged that several other federal courts of appeals have adopted a higher standard that requires an IEP to result in a "meaningful educational benefit."

But the 10th Circuit, agreeing with a lower court in Endrew F.'s case, said that a key 1982 Supreme Court precedent on special education, Board of Education of the Hendrick Hudson Central School District v. Rowley, merely requires an IEP to provide "some educational benefit."

Caps in Colorado

Nick Coltrain reports at The Coloradan about Colorado's insurance mandate:

Cari Brown knows her family is luckier than most that have a child on the autism spectrum.

Her 4-year-old son, Craig, was diagnosed early. While living in Utah, they “literally won the lottery” in having him selected for an intense therapy program. Seeing the night-and-day results prompted them to move to Fort Collins to take advantage of state insurance laws that mandate some level of coverage for autism treatments.

But not everyone has those opportunities, Brown realized, prompting her crusade to fix state law and remove the cap on how much treatment a child can receive. She calls it a “moral obligation” to help other families.

State Sen. John Kefalas, D-Fort Collins, raised her mantle and aims to carry a bill to that effect in the Legislature this year.

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 Ken Winn, chief clinical officer at Firefly Autism in Denver, said the difference in results between children who are diagnosed early and receive the behavioral therapy they need and those who don’t is drastic. Those, like Craig, who are diagnosed and begin treatment by the time they are 3 years old have a 90 percent chance of recovery, he said. [NOT REMOTELY TRUE]

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State law mandates insurers provide a minimum of $34,000 per year in coverage for children up to age 8; and $12,000 per year for those between ages 9 and 19. While the law specifies both of those amounts as minimums, most insurance companies don’t go beyond that, Winn said.

Even with the $34,000 minimum requirement, when dealing with young children recommended to have 40 hours a week in therapy, “you’ll hit that cap in a few months,” Winn said. When dealing with a lesser cap, as much therapy is focused on teaching the primary caregiver as it is working with the child — ironic, given the older one gets the tougher it is to break learned, socially unacceptable habits.

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Kefalas’ bill would set the treatment coverage requirement for each child patient to what is deemed medically necessary based on the child’s diagnosis. Children at different levels of the autism spectrum would be given different levels of treatment, based on their needs.

Utah Exodus

The Salt Lake City Tribune reports on a Utah family that moved out of state for services.

In 2008 in a decision that felt bitingly unfair, the Eliasons moved to Colorado, leaving friends and family behind. But for April alone this year, their insurance company wrote a check for $3,534 for Isaac’s treatment that month. It included speech and occupational therapy along with Applied Behavioral Analysis (ABA), increasingly recognized by states and other levels of government as effective therapy for autistic children. The Eliasons are part of what appears to be a small but growing number of Utah families with autistic children either leaving the state or seriously considering a move. ...

"I’m glad [the mandate] is attracting people to our state," said Bridget Cessar, interim executive director of the Autism Society of Colorado. "But I would also say that it’s not the only thing that a family should be looking at when they move here."

Colorado Mandate Falls Short

Katie Kerwin McCrimmon writes at Solutions:

Jacoby Peel turned 3 on Sunday and no longer qualifies for therapy to help him learn to communicate and cope with autism.

His birthday was a celebration, but for his family, it also felt like falling off a cliff.

Until now, Jacoby qualified for intensive therapy through a Denver County early intervention program. Now that he’s 3, the family is on their own to pay for his therapy and eventually find care through the public school system.

“It’s scary,” said Jacoby’s mom, Jordan Peel.

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Colorado passed an insurance reform law in 2009 and is one of 29 states that now require insurance companies to cover “evidence-based, medically necessary autism therapies.”

Despite that law, Peel’s insurance carrier, UnitedHealthcare, has deemed Jacoby’s therapy to be “experimental” and won’t pay for it. That leaves the Peels on their own.

“I’ve met parents in my position who feel the exact same way. You have a limited window of time in which therapy is most effective. Between the ages of 2 and 5, you can make the biggest impact. You want to do everything you can. I’ve known children who have done really, really well,” Peel said.

Peel testified last week at a public hearing called by the U.S. Department of Health and Human Services. Officials there are in the process of defining what health benefits are deemed “essential” under the Affordable Care Act. Peel was one of several autism advocates who pleaded with federal officials to invest in speech, occupational and behavioral therapy for young children with autism. The advocates are convinced that early intervention can dramatically improve the outlook for children with autism.

“Why should a child who is born with something have less coverage than someone who gets in an accident? There’s so much research that shows that intensive therapies can help children with autism,” Peel said.

“In the end, it will be so much less expensive for the system if kids can get in there and get coverage while they’re young…versus not being able to live independently some day. This is in everyone’s best interest,” Peel said.